Did that Mayo thing....

[timer lady]

and came home with the next phase of treatment plan.

Mayo doctor feels the encephalopathy (from the shingles) has improved as much as it will. (It's generally the first 7 weeks that you see the most significant improvement.)

The Cushing's can take up to 3 years to "cure". My next taper of prednisone (I'm at 10 mg) is down 1 mg every 2 weeks & then I stop at 5 mg for 3 months. After that, (depending how I tolerate this one), will be 1/2 mg every 3 months until I can discontinue the stuff. There is a concern that my adrenal gland will not kick in & do it's job because of the long term prednisone. After the d/c of the medication there may be other issues to deal with....I asked Mayo doctor to wait on that information. I see him again in 3 months.

It seems that the encephalopathy & Cushing's are the final diagnosis's & I'm okay with that. Now we need a plan to get on with life.

Mayo doctor would like to see more PT & Occupational Therapist (OT) ordered. A dietician was in yesterday to help set up a "prednisone" diet. Who knew there was a prednisone diet? It includes high amounts of protein & low sodium.

Mayo doctor told me I'm going to being asked to be the "poster woman" for the chicken pox & shingles vaccines! I'm going to be a star, ladies. :queen:

Who knew that the varicella zoster herpes virus (HHV3) could get so very debilitating & deadly?

 

[Lothlorien]

Shingles is nasty. Father-in-law had it on his head. Fortunately, he had a dentist appointment and the dentist caught it. He told him it looked like shingles and he could go blind if it's on his head, so he got himself to the doctor's and doctor gave him medication. It's come back once, but since he knows what it is, he goes immediately.

Linda, I'm glad that there are actual diagnoses now and that you will not be getting worse. I was worried that you could deteriorate further. Now, you have hope that you will get better. That puts a happy feeling in my heart for you!

 

[crazymama30]

I have seen people with deep wounds from shingles, and have seen one woman who almost lost her sight. I got chicken pox from someone who had shingles (when I was 30) as I never had the chicken pox!! Please be the poster woman!!! People do not understand how serious it can be.

I am glad you have some answers. I hope the prednisone taper goes well, and I am glad they are going so slow. Much better than fast.

 

[TerryJ2]

Sounds like they did a good job, Linda. And it sounds like you're feeling a bit better. Boy, you got hit hard. Sounds awful.
Poster child, eh? Hmm. I think you'd rather be known for your art, but hey, whatever.

 

[house of cards]

I'm glad you are feeling more confident in the dxes, along with all your symptoms not having a name to hang it all on had to increase the frustration. You have my prayers for a steady increase in strength/endurance and for your body to adjust well to the predisone decrease. The brain is an incredible organ and although it seems to take its time, it can heal itself very well. My sister suffered brain injury from a tumor/brain surgery so I do understand a little about dealing with the cognitive stuff, stay strong.

 

[Abbey]

Shingles....oh, my. I watched my former father in law go through that. I'm glad that you have a doctor who is really working for you.

Watch the Predinisone. I was on 90mgs a day for a couple of years. It can be very debilitating. Your dosage should be okay. Wean off slowly.

Abbey

 

[dreamer]

Im glad they are on the right track for you, thats great news! YAY!
Yes, shingles can be deadly---had more than one of my patients um, well, uh.......yeah.
BUT keep in mind, my own devastating life changeing illness was very possibly caused by me getting my normal routine vaccines....and yup- it nearly killed me and had me a quadriplegic for a few years. Unusual, yes, but....

<sigh> Life can be a giant roullette game. Keep on trucking. sometimes somethings really are just the roll of the dice even when you do do everything "right"

Im so glad things are going good. Yup, I am haveing a VERY difficult time weaning off prednisone, Ive been weaning now for over a year. :-( ~~ and my last decrease in July has triggered me to have a large increase in my original symptoms. Yeah, Cushings stinks, so much of this stinks. And soemtimes the decisions just are not all so easy. Somedays I feel like I made a deal with the devil and he is gonna come back to be paid back more. :-( BUT I never ever ever take my mobility or senses for granted anymore. I hugely treasure the gift of every single minute.

 

[flutterbee]

Linda -

I'm glad to hear the progress, however slow, is being made. Having answers has to be a huge relief.

 

[Star*]

Ya know -

I'd hug you but I dont' know where.

AIR HUGS (((((((( ________))))))))))))

And next time try MUSTARD - Mayo has so many calories.

CAN I HAVE YOUR AUTOGRAPH!!?
ON A CARDINAL PICTURE????

If you're going to be famous - I'd like to have my signature BEFORE you are the Mayo's someone - You're already OUR someone!

 

[Hound dog]

Linda

I'm so happy they've got a starting point and a plan to treat. I know that has got to be a huge relief to you. I hope it isn't long before you begin to see solid results.

((((hugs)))))

 

[mrscatinthehat]

So glad that you have a working plan. It took some time. Sucha postive note to your voice. Glad to hear it.

Beth

 

[susiestar]

I am so glad that they can help you. My parents are thinking of flying me to Mayo if things don't get better fast.

PLEASE do the poster child thing. My kids had the shot for chickenpox because while pg with Wiz I learned that I have no immunity to it. i had it TWICE - and the sencond time it kicked off the fibro. I was only 15 and NO ONE believed me about the pain. In fact my bffs in high school ALL had pain disorders and supported each other.

I am thinking the Zone diet cookbook might be a useful tool, if anything to give you ways to increase the protein.

Hugs,

susie

 

[timer lady]

In many ways, I feel better - in other ways the fatigue & pain get to me. The scarring & drooping of my face from the shingles bothers me less but is still bothersome. (I get stared at a lot by children. I get the parents apology & the scolding of children while I'm still there.) I guess I need a makeover.

My biggest concern is not knowing from day to day how my body is going to react to being asked to go about a day's business. husband got frustrated when he couldn't wake me last week.

Yet, I feel more positive ~ this is probably as good as it gets recovery wise; however no one is talking about things getting worse. The only thing I must watch is stress & infections. That affects the Cushing's & the need for add'l prednisone. I'm thinking of asking all the staff that wander through my home to have flu shots this year. (husband is willing to cover half the costs if the shots aren't covered by staff insurance. It's mostly our PCAs that concern us.)

The other concern is the muscle atrophy; need to find a water aerobics class or something nearby. I hesitate, with this economy, to join the Y or a health club.

So, it's a day by day life ~ just like everyone else. I believe I'll start painting my walker or at least decorating it for the upcoming holidays. I have a black (outdoors & stays in the car) & silver (indoor) walker; now I want a red or royal blue walker. How selfish can I get? :queen: Must be all the star power I'm feeling from becoming the newest poster girl/woman. Yup, that's it.

Thank you all for your support - I know I'll need it again - I can count on you all.

 

[dreamer]

I'm not sure about by you, but here, when I worked at he nurseing home it was required we get flu shots and they gave them to us on payday when we picked up our check. The facility paid for them. Pneumnia shots and flu shots. When I did home care, our agency would not hire us unless we had documentation we had them. This was for our own protection as well as protecting our clients.
Hope that makes you feel some better? It is highly likely they have been vacinated.
I think decorating is a great idea. LOL-----I always decorated my scooter and walker. Why not? Go for it!

 

[busywend]

Linda, I must have missed the shingles diagnosis somewhere along the way. I did not know that was what you had! boyfriend had it in Feb this year. I may have some questions for you!

I am glad you hear the diagnosis is final and there are no more questions. I hope decreasing the prednisone goes smoothly.

HUGS!

 

[susiestar]

I think asking the staff to all have a flu shot AND a current pneumonia vaccine is a good idea. husband is very generous to offer to pay half. In my town you can go on one special day and get a drive by shot for the flu. The line is over 3 miles long, but it is free for everyone - several hunderd or more shots! I don't go because our ins covers it completely, and so many people don't have coverage for it. But it is a great benefit from our city and the hospital here.

Be sure toi nclue current pneumonia, they last for a number of years, but it is very important.

 

[Stella Johnson]

There is a shingles vaccine? Or is it just part of the chicken pox vaccine?
Sounds like the Mayo people really know what they are doing. I'm happy you found a good doctor.

You have come a long way.

Steph